Dementia caregiver's "survival guide" useful companion

A new book titled “Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide,” by Nataly Rubinstein, a social worker who has also been a long-term caregiver for a family member who suffered from Alzheimer’s disease, is a winner. Her book speaks with the authority of a trained professional as well as the heart of a caregiver.

In “Survival Guide,” Rubinstein covers the nut and bolts of understanding dementia, practical tips on home safety, ways to snag some respite care so the caregiver can get time off, and many other practical tips. She also – and I give her much credit for this – asks the caregiver to take a look at his or her own attitudes which are brought into the caregiving job.

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When Rubinstein looks at the inevitable “behavior problems” that come with AD, she asks an important question that few approach. Why is this behavior (of the person with AD) a problem? Is the person with the disease actually in danger because he or she asks the same question repeatedly, or is the behavior a problem because the caregiver is tired of giving the same reply?

Rubinstein isn’t judging caregivers, she is simply explaining that education about what to expect from someone with AD, and an understanding of what is an inconvenience as opposed to what is an actual problem, helps the caregiver gain perspective. This perspective, in turn, helps make caregiving less stressful.

Some AD behaviors caregivers just need to live with, paranoia being one of them. It’s hurtful to be accused by your loved one of stealing things. However, once the caregiver learns to not take this behavior personally, the caregiver can cope more easily with the frustration and emotional pain.

She knows it’s very hard to care for someone with AD. She knows that caregivers need relief. But she’s a pragmatist. She knows that the caregiver is the person who is supposedly well enough to make the changes in attitude necessary to end at least some of the head-butting that can become a part of the caregiving experience.

She suggests to her readers that we tend to think there is only one “right” way to do things. This belief can limit our own options when we care for someone with dementia.When we realize that more flexibility on our part can make our own lives easier, we will gain the precious perspective that can ease the flow of the caregiver/care receiver dynamic.

With AD, relationships change and that can be painful

One of the most painful things for a dementia caregiver to cope with is that the relationship will change. Whether the person with dementia is a spouse, a parent, an adult child or a friend, there is no getting around the fact that the relationship with the person will be altered.

The once supportive spouse now needs help putting on his or her socks. The parent who was always our “rock” now doesn’t remember how to pay a bill, and eventually won’t even recognize us as their child. The adult child, who at 45 shows early on-set AD symptoms, becomes the person who needs help rather than the person who was going to be helping us in our old age.

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Rubenstein discusses relationship changes, as well as countless other emotional and many practical issues. I’ve found her “Survival Guide” to be one of the best books on AD and other dementias that I've seen for quite some time. “Alzheimer’s Disease and Other Dementias” is available in bookstores and online.